Trying to Practice What I Preached: Helping My Parents at the End of Their Lives

By Steven A. Schroeder

May 04, 2012 | Commentary

Once again, the challenge of how to constrain rising health care expenditures has caught the public interest, stimulated by concerns over rising federal debt and limited ability to generate tax revenues. I recently chronicled my unsuccessful efforts at stimulating medical cost containment from both academic and foundation positions (1971–2002) in the April 23, 2011 issue of the Archives of Internal Medicine. What I did not relate was how hard it was to put into practice for my own family the principles I had been espousing all those years.

Mom and Dad moved to El Cerrito, California, in 1954, into a small house north of Berkeley with a splendid view of the Golden Gate Bridge. Around age 80, Mom slipped into the early phases of Alzheimer’s dementia. Dad made the decision to keep her home, where she remained until her death at age 91. She had home health aides, and was comfortable, although it was painful to watch her previously keen intelligence fade month by month. Before she became ill, Mom and Dad had asked me how to prevent falling into the patterns of aggressive care, like cancer chemotherapy for advanced disease, that had befallen several of their friends. “Easy,” I replied, “your physicians were trained at the UCSF program that I headed, and they have lots of good common sense.” Even so, there were problems. Mom’s primary care physician was evaluated on criteria that included percentages of patients receiving Pap smears and mammograms, so Mom got those every year even though she was not a surgical candidate. And then there was the painful Mohs procedure for a facial basal cell carcinoma that was performed to prevent subsequent spread and scarring; that occurred at a time when she had stopped talking and had to be fed. I found it difficult, during my cross-country visits, to persuade the devoted attendants and my father to forgo those interventions. I also felt uncomfortable. Was I being callous by denying my own mother medical care that experts thought she needed? Still, Mom had what we might consider a “good death” at home, under hospice care, and with small doses of morphine the last few days.

Disclaimer: The views expressed in this paper are those of the authors and not necessarily of the authors’ organizations, the National Academy of Medicine (NAM), or the NationalAcademies of Sciences, Engineering, and Medicine (the National Academies). The paper is intended to help inform and stimulate discussion. It is not a report of the NAM or the National Academies. Copyright by the National Academy of Sciences. All rights reserved.